I was diagnosed in 2000 and have been taking Remicade since 2001. I have not had any trouble with the Remicade. I just had a colonoscopy yesterday and found out I have no active Crohn's. My physician wants me to think about stopping all treatment and the GI doctor I went to wants me to switch to Humira. I'm not sure what I should do. Should I just stay onremicade since it seems to be working?
Has anyone stopped treatment?
- Thread starter Briar
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I think you need to be on something. If remicade is working so well why stop it? What is your physician's reason for wanting you to stop? Statistically you stand a significant chance of flaring within a year of stopping so why would you do that?
Is your GI thinking that Humira is more convenient and that's why you should switch drugs? To my way of thinking that isn't a good enough reason to risk changing. You are likely to have a good response to Humira but you don't know until you try it. In the meantime you might have a reaction if you try to go back on remicade.
Now if you were having serious infections all the time and reactions to the remicade that were difficult to manage or were losing effectiveness - then I could see you changing meds or stopping altogether. Are any of those things going on?
Is your GI thinking that Humira is more convenient and that's why you should switch drugs? To my way of thinking that isn't a good enough reason to risk changing. You are likely to have a good response to Humira but you don't know until you try it. In the meantime you might have a reaction if you try to go back on remicade.
Now if you were having serious infections all the time and reactions to the remicade that were difficult to manage or were losing effectiveness - then I could see you changing meds or stopping altogether. Are any of those things going on?
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I'm pretty new here but not new to Crohn's. I have stopped and started many times. My Crohn 's has been inactive a lot but don't take that to mean you're not sick, because I am. I get what I call mini flares all of the time. They knock me out for a few days to 10. Unfortunately colonoscopies do not always show everything. For me it has presented itself in arthritis and just recently AS. I am getting ready to start humira because I need to stop joint damage. I don't know that I would stop something that works well. I stopped because the medicine at times had bad side effects.
Yes, my GI is mainly wanting me to switch for my convince. My physician thinks I should just stop all treatment because i have not had a flare up in 10+ years and says I may not ever have another flare up.. He also doesn't want me to just jump to Humira because it can or could cause lipoma.
David
Co-Founder
Can you provide detail of what your life was like prior to Remicade? What were your symptoms? How long did you have those symptoms? How were you diagnosed with Crohn's?
Just in case you don't feel like taking the time to do that, I'll give a partial answer. That would be that I think it would be an ENORMOUS mistake to stop all treatment.
Just in case you don't feel like taking the time to do that, I'll give a partial answer. That would be that I think it would be an ENORMOUS mistake to stop all treatment.
Well I'm 23 now, I was diagnosed when I was 11. I was diagnosed because I wouldn't eat any food because of the pain and I hadn't grown in over a year. I had a pretty serve flare up. The doctors said they couldn't do surgery because it was infecting my entire digestive system. Then I started Remicade and I have been practically fine ever since.. I have some joint pain and occasionally some stomach discomfort (especially near the time of my next infusion) but the last 5 or 6 years I don't have anything to complain about
David
Co-Founder
You used to have stomach discomfort near the time of your infusion or you still do?
And did they diagnose your Crohn's via colonoscopy with biopsy?
And did they diagnose your Crohn's via colonoscopy with biopsy?
David
Co-Founder
Based upon what you've said, I stick by my assertion that stopping all treatment would be a really bad idea. I personally think sticking to Remicade would be best, but if your GI sees tests that make them think that it is no longer working as well for you, then switching might be best if upping dosage isn't viable in their eyes.
theOcean
Moderator
Humira is very convenient, but if Remicade is working so well for you there's really no reason to switch. How often are your infusions?
I think your physician may need more information about the recent research findings on the biologics which has found no clear link between them and increased risk of cancer (I assume by lipoma you meant a form of cancer).
As I said before, switching for convenience seems like a bad idea to me. Save Humira in case you lose effectiveness with Remicade.
Generally people diagnosed as children have a more severe disease course. Just because remicade stopped that in its tracks doesn't mean you won't return to a severe disease course when you stop. I don't know if anyone can say one way or the other at this point but it's a question you could ask your GI. I'd say he expects you to continue to have a severe disease course since he's recommending you switch to another biologic - not drop down to an immunomodulator or nothing.
What do you want to do?
As I said before, switching for convenience seems like a bad idea to me. Save Humira in case you lose effectiveness with Remicade.
Generally people diagnosed as children have a more severe disease course. Just because remicade stopped that in its tracks doesn't mean you won't return to a severe disease course when you stop. I don't know if anyone can say one way or the other at this point but it's a question you could ask your GI. I'd say he expects you to continue to have a severe disease course since he's recommending you switch to another biologic - not drop down to an immunomodulator or nothing.
What do you want to do?
Briar you are very fortunate that remicade gave you a life. It worked for me for 9 years then stopped working. Tried humira but no response.
If it ain't broke don't fix it. Be thankful.
Patricia is right about the early onset of crohns in childhood usually results in more severe disease paths. I have seen it quite a few times.
Your GP is wrong about stopping and your GI is working for abbottvie maker of humira.
Had the same problem with mine.
The sad reality is so far no treatment works forever and remissions don't last forever either.
Stick with remi and enjoy your life
If it ain't broke don't fix it. Be thankful.
Patricia is right about the early onset of crohns in childhood usually results in more severe disease paths. I have seen it quite a few times.
Your GP is wrong about stopping and your GI is working for abbottvie maker of humira.
Had the same problem with mine.
The sad reality is so far no treatment works forever and remissions don't last forever either.
Stick with remi and enjoy your life
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